“We congratulate the Minister for recognising that these women have waited too long for validation from a system that treated them as unreliable witnesses to their own pain and suffering.” “But ‘sorry’ is just a good first step. It doesn’t in itself deliver a happy ending.”

While the government has supported 12 of the 13 recommendations of the Senate’s Inquiry into TVM, half of these are supported in principle rather than in substance. In fact the only tangible initiative is the announcement of a Clinical Quality Register for urogynaelogical procedures and even that commitment is capped at “considering the feasibility” of establishing such a register.

Glaringly absent is any new funding to resource integrated care pathways for affected women.

“We are concerned that State and territory support for mesh affected women has to date been inconsistent and patchy with attempts at meaningful co-design of care pathways happening only in a small number of states.

“These women must be central to the design of appropriately resourced and compassionate, multidisciplinary care that includes access to removal by skilled clinicians, pain management and psychological support. We call upon COAG to direct the states and territories to work together to ensure a nationally consistent service response to women’s healthcare needs.

“While the federal Health Minister has kicked the mesh can down the road to the States he is also calling for system reform through institutional self-regulation. Expecting the various bodies that failed their duty of care to pick up their game without addressing their accountability is a forlorn expectation.”

“Further expecting the TGA to improve its adverse event reporting is at odds with the fact that they have registered 364 events to date compared with the 1,000 women who are parties to class action and the 2,400 women who have reported their experiences directly to consumer health groups. “The Minister needs to act decisively on the question of credentialing surgeons and on mandating informed consent (70% of affected women did not give informed prior consent to their procedure). While we applaud the few substantive initiatives announced in this response, a reliance on nonbinding guidelines and self-regulation by bodies that have failed to self-regulate will not wish the problems of mesh away.

This letter has been submitted to the Australian Commission on Safety and Quality in Health Care by each state’s Pelvic Mesh Support Groups and the Health Consumer organisations in each State and Territory across Australia, asking the Commission to comprehensively address the recommendations tabled in the Senate Report (see below post).

Excerpt:

This letter is a joint appeal from each state’s Pelvic Mesh Support Groups and the current Health Consumer organisations in each State and Territory across Australia. On behalf of all mesh injured women of Australia, and those who may in the future access treatment for stress urinary incontinence or pelvic organ prolapse we write to you, the Australia Commission for Safety and Quality in Healthcare to comprehensively address the recommendations tabled in the above report. We need and value your support in addressing the urgent call for action to prioritise the management of this medical disaster that is crippling Australian women and their families.

Women from the Support Groups are struggling with lifelong complications, physical and mental ill health, pain, suffering, financial burden and significant loss of life as they knew it. They feel that there needs to be a dramatic cultural change in treatment, reflected from the top and ensured by ACSQHC.

There is a significant lack of trust in the medical treatment these women have received; they have been dismissed, ignored and gaslighted into believing their ailments were “all in our heads”. As Senator Rachel Siewert, Chair of the Senate Inquiry, stated in her report release speech: They have suffered for so long without being heard. They have not been believed. In some cases, they’ve been belittled. They have been ignored. Well, for no longer shall they be ignored.

Appropriate pathways for lifelong care are now required. A trauma based model is needed for treatment moving forward; together with empowerment for all women at every stage of their journey.

Vindication for mesh injured women: but suspend mesh until after audit results

Australia’s state and territory based health consumer organisations have welcomed the recognition of the extent and impact of harm to women, and the recommendations contained in the report from the Senate Inquiry into transvaginal mesh implants released yesterday. But they say they hoped the report had gone further.

“We are very pleased that the Senate’s recommendations reflecting our calls to strengthen provisions for informed consent, only using mesh as a last resort, requiring mandatory reporting of complications, establishing a register (which should be retrospective and for all transvaginal mesh devices) and having the Australian Commission on Safety and Quality in Health Care do an audit of transvaginal mesh procedures in Australia. The Commission must be resourced to do this in a timely manner and the audit should also include procedures done by private specialists” said state and territory consumer peaks spokesperson Melissa Fox, CEO of Health Consumers Queensland.

“However until the community sees this accurate, retrospective data we won’t know just how many women have been harmed by all types of mesh including POP, tapes and slings. We are disappointed that a more cautious approach wasn’t taken, to recommend the suspension in use of all mesh until the data is in to establish their safety and efficacy. These devices will continue to be implanted in women in hospitals across Australia tomorrow, and not one more woman should be unwittingly subjected to this high-stakes surgical intervention until we can be assured of their safety”, said Ms Fox.

Women who have had mesh surgically implanted to treat vaginal prolapse or urinary incontinence were invited to respond to a survey from Australia’s state, territory and national peak consumer groups, including Health Consumers Queensland. The experiences reported will be vital to inform a joint Senate submission being drafted by our organizations.

(Note that mesh can also be referred to as tape, a sling, or TVT)

This survey is now closed. Health Issues Centre would like to thank all of the women who have bravely shared their experiences of pelvic mesh implants. We will continue working on behalf of all mesh injured women. You can follow updates on http://www.facebook.com/UnderstandingPelvicMesh .

The Australian Commission on Safety and Quality in Health Care (the Commission) organised a series of consumer consultation forums with the assistance of state health consumer councils in Brisbane, Melbourne, Perth and Sydney from January to March 2017. The intent was to provide consumers with the opportunity to provide information about their experience of transvaginal mesh treatment to inform the development of patient decision support resources.

Thirty-one women participated in the forums, either in person or by telephone. All but one of the women who participated in the forums had experienced complications following transvaginal mesh treatment, and the majority of participants had been treated for stress urinary incontinence.

The common themes and issues raised by women who attended the forums are summarised on this page.

Health Consumers Queensland is feeding into a joint submission from the state and territory peak consumer organisations across Australia. Our equivalent organisation in Victoria, Health Issues Centre, has created a time-limited Facebook page to gather feedback from consumers to inform this submission. All information will be used without identifying the respondent.